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We have been traveling the detour for two months now. We are all still sane (or as close as we can be) and can find humor in some of our journey. I view that as a positive. I continue to be in awe of my son and how he has handled this. We have yet to hear a "why me?" or a meltdown.
We are hoping he had his last chemo treatment a few days ago. We await the scan to determine whether additional chemo is needed or if he gets to move on to the next form of torture - radiation. Hopefully our travels down the detour will be coming to an end soon.
Here are some observations I have made along the detour.
During difficult or bad times, take attendance as to who is present. I think you will be surprised by who is there and who is not. Focus your attention on those who are present. You will be happier that way. I am still trying to work on that one.
Nurses are amazing people. We have yet to encounter a nurse that was not caring. In the oncology unit, the nurses brighten up when they see my son and pop in during treatment to talk with him. Early on during our detour when we were still uncertain as to what we were dealing with, the nurses were our lifeline for information. I used to think Hospice workers were angels on earth but I think all nurses are.
Little gestures mean a lot. An email, text message, phone call or card can brighten a day. The days following treatment are long and difficult. Those little gestures helped to lighten the load during particularly rough days.
The quiet of 3am is when fear comes knocking. Do not give into it. Try to keep positive thoughts and energy in your life. They make the detour easier.
Ask the person with the illness how they are. My son complains that many people - especially extended family - fail to ask him. They think they are helping by ignoring it but instead are insulting him. He is in the biggest battle of his life and would like that recognized. Another thing that drives him crazy is when someone asks me how he is and he is right next to me.
Along that same line, even though my son's prognosis is good, he has to go through hell to get there. Many people seemed to forget that.
Plan for the unexpected. We were sent reeling when our son's college denied his return in the fall because of the cancer. Thanks to our son's oncologist and my husband's unrelenting pressure, the school finally changed their decision. Never in a million years did we think we would have to fight them and cancer.
Chicken soup really does work wonders. On days when my son was quite nauseous, chicken soup in its various forms were things he could eat. Thank heavens for the late hours at our local Chinese restaurant and their won ton soup.
Each chemo treatment brings a different side effect. Just when we had figured out how to handle one, a different one would pop up.
As a parent, you want to hover. Do not. We let our son take control of his illness and care. He had so little control in his life this summer, he needed this. He knew we were there for him. When the pain would get to be too much, he would ask that we call his doctor. He had friends take him to some chemo treatments to help provide diversions. He knew if he needed something, he just had to ask us. He has thanked us countless times for giving him this control. It wasn't easy for us but it was the right thing to do.
Teal hair makes cancer more fun. My son's friends decided a bright hair color was the way to deal with hair loss. His hair is quite short now thanks to the "shedding" and the teal helps to detract from the bald patches he has. People often stare when he is out. To those who make comments - especially negative ones, my son looks at them and says it is the effect of chemo. So true. Had he not had chemo, he would never have teal hair.
Here is hoping the next posting from the detour will be to announce the detour is over.